Advancing policies and federal, state, and, local legislation to prevent FASD or benefit individuals and families living with the condition is an important part of the NOFAS mission. NOFAS works with its affiliates, partners, and other FASD stakeholders to identify issues, develop strategies, and communicate a policy and legislative agenda to advocates and policymakers. NOFAS advocacy activities include:
- Briefing lawmakers, legislative staff, and other policymakers
- Training advocates
- Drafting policy papers and legislation
- Issuing action alerts
- Updating FASD stakeholders and the general public on the status of FASD-related policies and legislation
- Integrating advocacy into NOFAS programs and media outreach
NOFAS supports efforts to advance legislation and policy relevant to FAS and FASD at the federal, state, and local level.
Legislation refers to bills on which elected government officials vote to become law.
Policies are rules and regulations set by agencies and organizations as they carry out their functions. An agency may create or edit policies in order to comply with relevant legislation, or in order to carry out its legislature-determined goals.
Many states pass Resolutions that, while having no force of law, bring attention to the issue of FASDs- an important first step.
NOFAS is committed to guiding local FASD organizations who are interested in passing beneficial FASD legislation in their states and local governments. Examples of such legislation, taken from a state-by-state list developed by the FASD Center for Excellence, are shown here:
A few notable examples:
- Prevention: Delaware House Bill 75, which requires that healthcare providers provide written and verbal warning to pregnant mothers about the dangers of using alcohol and other drugs while pregnant
- Prevention: Hawaii House/Senate Concurrent Resolution to request that the Department of Health establish a coordinated statewide effort to address fetal alcohol syndrome
- Funding: Nevada Assembly Bill 629, which appropriates over $100,000 to fund 25 diagnostic clinics for FASDs
- Funding: Arizona Senate Bill 446, which appropriates $5,000,000 each year for the expansion, enhancement, and evaluation of substance abuse treatment services for pregnant women
- Treatment: Illinois Senate Bill 0337 adds FAS to be included as a recognized developmental disability
- Treatment: Utah House Bill 3165, which directs local and state human services to provide priority substance abuse and treatment services to pregnant women
- Legal: Alaska Senate Bill 151, which allows for mitigation at sentencing when the court has found that the defendant has been affected by an FASD
- Legal: Colorado House Bill 21-1100, which makes the results of information related to substance abuse discovered as part of pregnancy testing or the provision of prenatal care inadmissible in criminal proceedings.
- Requirements for Professionals: New Jersey Assembly Bill 1908, which requires the formation of an autism and intellectual and other developmental disabilities awareness program for certain first responders. The state of New Jersey considers FAS to be a developmental disability.
- Requirements for Professionals: Minnesota Senate Bill 2695, which exempts healthcare providers and social service professionals from required reporting of prenatal substance use, provided that the healthcare provider or social service professional is providing the woman with prenatal care.
Note: This same bill requires that those not exempt are still subject to mandatory reporting. Please see below for information on why mandatory reporting may not be beneficial
While most FASD policy and legislation is constructive, some policy changes and legislation have the potential to do more harm than good. Laws that seek to discourage alcohol use during pregnancy through criminalization may reduce women’s likelihood of disclosing alcohol use during pregnancy to their healthcare providers out of fear of criminal charges. It is vital that women feel free to discuss all aspects of their pregnancy and health with their healthcare providers in order to receive appropriate care.
Here are several examples:
- Alaska House bill 408, which requires a healthcare provider who delivers or cares for a baby that s/he determines to have been affected by prenatal alcohol or other illegal substance exposure to notify law enforcement.
- Washington, DC B19-466, which requires healthcare providers to notify the DC Child and Family Services Agency when a child under one year of age is diagnosed with an FASD, and expands the definition of neglect to include infants diagnosed with an FASD.
Current policy and legislative items that NOFAS is following include:
- S.237, the Advancing FASD Research, Prevention, and Services Act introduced in the U.S. Senate. NOFAS has issued an Action Alert urging FASD advocates to contact their U.S. senators asking them to cosponsor the bill.
- The restoration of funding for FAS at the Department of Health and Human Serives, Substance Abuse and Mental Health Services Administration (SAMHSA). In fiscal 2014, FAS funding at SAMHSA was reduced to $1 million from $9.8 million in the previous year (the actual amount available for FAS at SAMHSA in 2013 was $8.8 million after the mandatory sequestration reduction on March 1, 2013). NOFAS is calling for Congress to restore FAS funding in fiscal 2015 to $9.8 million.
- The inclusion of FASD in DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) published by the American Psychiatric Association [Update: Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE) has been included section III of DSM-5 with other conditions that have clinical guidelines and criteria but require additional research to validate the criteria for diagnostic use with patients;
- An FASD resolution to be considered by the American Bar Association [Update: PASSED unanimously on August 7, 2012].
Check back soon for more information about NOFAS advocacy.